Alcohol Intolerance poll. Please do the poll even if your answer is no.

Quite a few people have mentioned a 'poisoned' feeling and I'm wondering what that feels like. Presumably not a lot of us have actually been poisoned in the past and so aren't basing that label on experience - and maybe different poisons (strychnine, arsenic, etc.) produce different symptoms.

So when different people are saying 'poisoned', I'm wondering if they mean the same thing. Is anyone able to take a stab at describing the symptom(s) in a more direct way?

I think we have a similar problem with OI, where our standard vocabulary isn't up to the job, but I wonder if we can make some progress with 'poisoned'.

How are you interpreting 'poisoned', @Jonathan Edwards?

 

I put "worsened "hangover" effect the next day. Somehow poisoning but it´s difficult to describe it.
I can drink glass of wine or a small beer. Sometimes I drink 2 beers but the next day I feel bad, I think it´s a bit different to a normal hangover.
What is strange that if I am very exhausted and I drink 2 beers for some hours I get energy and I feel better but the next day is horrible.
Also many years ago, when I had mild ME/CFS I had a periode of some months when I felt almost healthy but then one day I got drunk I throw up and my ME/CFS got again much worse. I ask myself if I wouldnt drink that day, maybe I could be healthy.

 

As I drink a small amount every day, I can't say whether I feel worse, the same or better the next day.

 

I am interested too, I don’t think I have ever used the word poisoned but I knew from the beginning that people with MECFS use the term.

a few descriptions from other threads:

 

Before ME/CFS I drank just a little alcohol, later I tried a bit of wine at a dinner party but it gave me hot flashes, made me a zombie and at night too wired to sleep.
Not social at all. So I stopped that.
After a bowl of yoghurt from the fridge I later used 1/3 of a shotglass of port just to get warmed up again.
Since diabetis I don't use any alcohol anymore. For warming up a hot drink will work.

 

I once had a long discussion about this with someone who got ill a bit later in life than I did, and he said the closest thing from his preME/CFS life was a hangover. He played in a rugby team in his teens and early 20s, and he'd had plenty of them after winning important matches.

It's a strong feeling that there's something in your system that doesn't belong there, and your body really really wants rid of it. Waves of severe nausea, diarrhoea as well, dizziness, pounding headache, thirst, whole body hurts, and muscles feel as if they've been flushed with acid.

A severe alcohol hangover probably is a mild case of poisoning, so although I've never had one, it makes sense to me that he'd draw a comparison with this.

 

Thanks, Kitty - several people have mentioned an acid or burning sensation.

 

When my ME/CFS was mild, I was still able to drink a little wine. But twice I had spirits - one glass of Pimms (no other alcohol before or after), and on the other occasion a few sips of a cocktail to be polite (again, no other alcohol before or after) - and they had a sedating effect. After the Pimms, I literally found a bed (in someone else's house) and fell fast asleep in it. I couldn't tell anyone what was happening, I just knew I had to go to bed straight away. After the sips of a cocktail, I couldn't go to bed immediately, but slept for 12 hours, was woken and had to be up. There are photos and I look grey.

This sedating effect of spirits reminded me of the onset of the relapse of my ME/CFS after an apparently complete recovery. I felt suddenly like I had to lie down right away during a dinner with dear friends, where we were enjoying wine which happened to be unusually strong. I couldn't tell them what was happening, I just had to leave the table and get into bed.

So for me, alcohol became sedating. I chose "other unpleasant symptoms" in the poll, as well as "aggravating ME/CFS symptoms" because it felt different to my usual ME/CFS symptoms. It wasn't just needing to lie down right now, it was needing to sleep immediately.

I tried non-alcoholic wine - I felt bad in the following days, in terms of worse ME/CFS symptoms, but PEM from talking and stimuli would also have contributed.

I just stopped drinking.

Edited to add: The symptoms I got with alcohol + ME/CFS were different from a hangover when healthy. A healthy hangover for me involved nausea and disturbed sleep, whereas the sedating effect I got from tiny amounts of alcohol with ME/CFS brought no nausea, just coma-like sleep until someone woke me.

 

From testimonies of this in the LC community, which are far more common than in the ME community, I get the impression that it is more associated to POTS and dysautonomia, as well as MCAS, than ME/CFS. With the overlap between those, and how those overlaps fluctuate, it's hard to tell. However I mostly remember seeing it mostly mentioned early in the illness, and that it subsides a bit over time. Which is usually the case with more severe dysautonomia symptoms.

I would really like a good survey on this, though. As in thousands of responses and more questions. Something like from the Patient-led group that sprung out of Body Politic, they are the best at this kind of survey. So much about this kind of data is in how the questions are asked.

 

It is an interesting question ‘is PEM and other features of ME related to something that shouldn’t be there or to something missing?’ At times it subjectively feels like one and at times the other.

 

Yes, this was very true for me.

 

I've been thinking about this. Until the last few days, on this thread and the 'Concept of ME/CFS' thread, I don't recall any PwME using this term, and if someone had asked me whether feeling poisoned was a feature of ME/CFS, I'd have said 'No'.

This is clearly a failure of my memory, but the fact that I didn't remember it makes me wonder if it's relatively rare, or something that only gets discussed in relation to something very specific that doesn't relate to me much, such as here with alcohol intolerance (I rarely drank alcohol even before being ill), or only occurs in a subgroup of patients, such as those who feel poisoned when they have PEM (if people do - I'm not sure if anyone has said that).

A search for 'poisoned' on the forum brings up about 300 posts (not all relating to the symptom of being poisoned). I wonder if it's worth mining the forum for those mentions.

We've been discussing on another thread @forestglip's idea to do a daily summary of the forum's content but people had concerns about accuracy, privacy, fossil-fuel energy use, copyright, etc. so I think it's not going ahead but I wonder whether using it to list verbatim - not summarise - every post where someone discussed being 'poisoned' as a symptom might be a good use. (Perhaps similar listings could be done for other symptoms that @Jonathan Edwards is interested in.)

It's a use that would have to be discussed and agreed by the S4ME committee, of course.

It would also be possible to produce such a listing for 'poisoned' the old-fashioned way of cutting and pasting. Maybe we could share the work.

 

You used to be able to do this with search engines quite well (for public mosts at least) but they seem to have all gone downhill
https://duckduckgo.com/?t=h_&q=site:https://www.s4me.info/+poisoned&ia=web
The forum’s built in search can possibly be used/scraped
https://www.s4me.info/search/34315704/?q=Poisoned&o=date
I think the newer XenForo 2.0 has an API which may make this sort of thing easier

 

I also used the term feeling poisoned the next day after drinking a bit more alcohol but I am not sure if it´s accurate. In my case it´s definitely something else than my "normal" PEM, I feel somehow destroyed, unwell, like after an accident with a truck but difficult to describe. Even the day after drinking alcohol I can have my usuall energy range, but I feel very destroyed physically. When I was healthy I never felt like this after drinking maybe 7 beers. Now if I drink ocassionally 2 beers, I feel totaly destroyed the next day. Normally you dont feel that destroyed after drinking 2 beers.
This was always very strange for me, why so many ME/CFS patients seem to have alcohol intolerance? I dont know if it´s also common in another illness. But I think definitely worth to investigate it and maybe it can tell us something interesting. Couldnt it be something wrong with our livers?

 

I’m not sure if poisoned works for me although the quantities were small, certainly compared to what I drank pre-ME. From what I remember it was perhaps like all the bad bits of drinking without any of the good bits?

The idea of something not being broken down or processed in the way it did pre-ME would sort of make sense to me in this context.

 

Suggestions from the thread linked earlier, https://www.s4me.info/threads/alcoh...yndrome-2023-maciuch-jason.33560/#post-549305

 

I don't think it's necessarily linked to alcohol at all, so it may need a separate discussion. It's a feature of PEM for some people, and severe or long-term crashes in others. I've only had it in my worst periods of illness [edit: it persisted for months and was never a consequence of alcohol], but my description seemed similar to other people's. It did used to feature in symptom lists for ME/CFS.

I'm not sure why it's not discussed more. It could be that it's only present in a minority, or that people are uncomfortable using the term 'poisoned' because it sounds a bit off the wall, but they can't think of a better one.

 

What is also quite telling is that not one person has made a joke about us all conducting an experiment in the name of science

 

When lowered blood volume might play a role in ME/CFS, could drinking alcohol work way faster and more furious?